Quality of a Life with Dementia

After seven years of helping my father cope with his senile dementia, I've learned a lot about the disease.  But after just a month of having Dad in a professional Alzheimer care facility, I've been learning even more.

Up Side of Down

For example, I've learned that an upside-down brain may bring some sort of comfort to Alzheimer patients.  At least two residents at this facility seem to derive significant relief from contorting their bodies so their heads are upside down.  Why else would they bend over so much that their bodies are actually folded in half, with their torso parallel with their thighs, so their ears are level with their ankles?

I've seen one woman hold that position more than once, sitting on a sofa, with the top of her head brushing the carpet on the floor, and frankly, I don't know how she does it.  Or how she can sit in that position for as long as she does - at least 15 minutes at a time.

Yesterday, I saw one poor man splayed feet-up across an upholstered chair, so that his head was propped just above the floor, his face burrowed in the chair's fabric skirt.  He'd figured out how to balance himself in that position so he wouldn't slide off head-first onto the floor.

Converse - Ation

I've also learned how fragile speech can become for dementia patients.  At least two residents who are staying at Dad's facility simply cannot speak coherently most of the time.

It's not that they're babbling or deranged; they appear to be trying to communicate normally.  They pronounce words correctly, and string them together into sentences.  They speak these sentences with a normal cadence, and if you didn't know the English language, it would sound like they're speaking in conventional sentences and paragraphs.  But the words they speak literally have zero relationship to each other.

For example, they could say "blizzard chair coming bathroom Chrysler soup," and look at you as though they're trying to say "it's a sunny day."

So I simply nod and reply, "yes, that's interesting," or something like that.  I've tried to find some thread of meaning that might be running through the words, but there's little point.  Theirs is merely another example of trying to function, but being deprived by dementia of the ability to do so.

One day, Dad was having a conversation with one of these residents - she kinda looks like Mia Farrow - who cannot speak coherent sentences, and I discovered that their entire vocabulary consisted of the word "yes."  Back and forth, between the two of them, with only one word.  Dad can still speak normal sentences, so I'm not quite sure what he thought he was doing, saying "yes" all the time, in response to the other resident's "yes."  Yet somehow, they seemed to have some purpose in their exchange.  Otherwise, why continue to say "yes" back and forth?

Actually, many dementia patients have an extremely limited vocabulary.  There's one tall, slender woman who silently walks around the Alzheimer facility all day, every day, patting on the handrails that line the hallways, and patting on people's shoulders and arms as she passes them.  I call her "Patricia."  You can be a complete stranger, like I used to be, or a fellow resident of hers, and she'll softly pat you without saying anything.  In fact, I'd never heard her speak, but one day, she tugged at a belt loop on my pants, finally murmuring that it must be a "tear" in the fabric before she walked on.

That's still the only word I've heard from her.

Not that Patricia can't communicate well, however.  One afternoon, I went into the secretary's front office to ask her something, and Patricia was sitting, motionless, in one of the chairs facing the secretary's desk.  The secretary explained that earlier in the day, she'd accidentally hit Patricia's foot while pushing a wheelchair-bound resident, so Patricia was spending the rest of the day in the secretary's office, glaring silently at her in protest.

"I keep apologizing to her," sighed the secretary remorsefully, "but this is my punishment."

Red Dress

Red seems to be an important color for dementia patients.  I've already told you about Shirley, and her ubiquitous red cardigans.  Well, one day last week, the normally cheerful Shirley was uncharacteristically glum.  A daughter of hers was visiting with her in the lobby, and I heard her ask her mother why she wasn't wearing her customary red sweater.  I don't know if there was a correlation between Shirley's sour mood and the fact that she wasn't wearing her red sweater, but the next day, the red sweater was back, and so was Shirley's good mood.

Some studies suggest that dementia can affect the color spectrum of a patient's eyes, which makes the color red particularly recognizable to them.  It's been said that red tableware helps finicky Alzheimer's patients eat more, and putting water in red glasses helps them stay better hydrated, because they'll more willingly drink from red containers than clear ones.

At Dad's Alzheimer facility, Patricia once tried to take my raincoat, which is red.  She started patting it and stroking it as it lay across my arm, but then she started pulling insistently at it, without saying anything.  I gently told her that I was going to need the coat when I went back outside, so she finally relented.  Another time, Mom was wearing a red coat, and another resident picked at it, raving admiringly yet incoherently about it.

Otherwise, nobody seems to care what we wear.  In fact, none of the residents seem to care what they wear, either.  One poor lady, who can't control the awkward stretching her arms and neck force her to do at inappropriate times, usually wears a thin nightgown no matter the hour.  Another woman - who must have early-onset dementia, since she's probably in her mid-50's - wears pajamas most of the time.  As long as residents are modestly covered, the staff of this facility, along with the residents' relatives, don't make much of a fuss about the time of day certain items of clothing are usually worn out in the "normal" world.

The staff does the laundry for all of the residents, and sometimes, clothing gets mixed up.  We'll find Dad wearing other peoples' shirts and pants, but he doesn't realize it.  I'm not even sure he realizes he wears a fresh change of clothes every day.  When he was at home, however, he'd get furious with Mom when she'd ask him to change out of the shirt and pair of pants he'd worn every day of the past week.

Among the residents, the concept of private property ownership is taken loosely anyway.  Residents commandeer wheelchairs and walkers whenever they need them, regardless of who actually owns them.

One lady has a fondness for Dad's four-footed cane, yet she doesn't know how to use it.  She'll wander around holding the cane horizontally in both of her hands, like she would a baton.  Maybe she was a cheerleader in her younger days.

Canes seem to be frowned upon in the Alzheimer care world, since they're inferior at preventing falls for users who aren't aware of their brain's inability to judge balance.  Dad is the only resident I've seen with any sort of cane.  Many ambulatory residents have fancy wheeled walkers, but Dad can't figure out how to use them.

I think we're expected to provide Dad a wheelchair for those times when he needs one, but so far, the residents trade out their equipment so freely, Dad's been able to get his occasional ride without any fuss.

Going Home

Unfortunately, Dad fusses about more serious things.  Like wanting to leave.  Just yesterday, as we arrived for our afternoon visit, we caught him at an emergency exit door near his room, having already tripped an alarm by trying to escape into a fenced side yard.  As two staffmembers came running to corral their charge, Mom and I herded Dad back to his room, with Dad mumbling crossly about all the fuss we were making.  "I was just reading the directions on the door," he fumed.

Sure enough, on every emergency exit, there are big signs required by city safety codes with detailed explanations about how the door works.  It's the ideal recipe for encouraging escapes:  take a bunch of people who don't understand why they're being kept confined, and mix in some doors with bold instructions about how to exit through them.

"Just because these people have Alzheimer's doesn't mean they can't read," an exasperated staffer once told me, as her co-workers were running off to yet another open-door alarm in the building.  The owners of the facility have tried reasoning with city officials to make the doors less straightforward for their residents, but to no avail.  As long as a resident can wait the 15 seconds the signs say it takes for the door to open - and the alarm to sound - they'll keep doing it.

Homeward Bound

Indeed, as diverse and individualized as each resident's case may be, they all share at least one common trait:  nobody wants to stay there.  Sure, not everybody gets to break out into the fenced side yards; many have degrees of dementia so debilitating that they can't figure out how to work the emergency doors.  Others are confined to wheelchairs.  Yet if they all could leave, I suspect they all would.

Where would they go?  It depends, of course.  But they may not want to go where you think they would.

When Dad still lived in his house, where he'd lived since 1978, he'd nevertheless be pining for "home."  We learned that "home" often meant one of two apartments in which he'd grown up in Brooklyn.  Alternatively, "home" also came to mean Heaven, since Dad's strong faith tells him that when he dies, he'll immediately be in the presence of Jesus Christ.  I've come to understand that for a dementia patient, "home" becomes anyplace where they'd be free of the prison that their dementia is building for them.  And in Dad's case, he still seems to know from decades of trusting in Christ that the only true freedom for which he can hope will come through his physical death.

Not that dementia patients have the capacity to strategize their own suicide.  We often say that only crazy people kill themselves, but dementia patients aren't crazy; their memory has simply short-circuited.  You'd think that, since all forms of dementia eventually lead to death, suicide might be a popular escape for dementia patients.  For those of us still in possession of our mental faculties - relatively speaking, of course - the act of suicide is at least something we can conceptualize, even if we'd never consider it for ourselves (read an exception to this rule here).  For dementia patients, however, suicide seems to be one of the many things about which they've completely forgotten about.

Except for our friend Shirley.  During that uncharacteristically gloomy day of hers, Shirley told me she wanted a pistol so she could shoot herself in the forehead.  Of course, Shirley is one of the most verbal and animated residents at this Alzheimer facility, so she's hardly representative of her fellow residents.  And Shirley's mood didn't last, either.  Sure enough, after a staffmember overheard her and calmly purred that "nobody's shooting themselves here today," Shirley let the idea slide.  At least for a while.

The longer I'm exposed to this place, the more I see how it's not just a job for the people who work here.

Although my Dad and his fellow residents are staying at a for-profit memory care facility, there's more to this side of the healthcare industry than simply money.  There's a whole philosophy about how sacred life is.

At least two residents at this facility are completely bed-ridden.  They can't move; their faces, arms, legs, and hands appear to have frozen into odd contortions.  I've never even seen one of these profoundly immobile residents blink their eyes.  Staffers must have to give her some medication to keep her eyes moist.  Each of these patients simply lays there, their mouths open or closed, their eyes not focused on anything.  Yet the staffers wheel them about the building on mobile beds, making sure they're included in the day's various activities, and otherwise treating them with respect, dignity, and purpose.

Indeed, life isn't over until it's over.  And while none of the lives being lived out in this Alzheimer's facility display cognitive attributes anybody would desire for themselves, there exists a persistent degree of reluctance to admit that the battle for life's sanctity is over.  Nobody seems willing to admit that these people have become so burdensome to society, so unnecessary, so impractical, and so unlovable, that their mortality should be terminated.

Statistically, the bitter reality is that an average stay at this facility is two relatively short years.  And those two years comprise the final two years of a patient's life.  Sure, companies make profits off of dementia, and the cynic could say that it's only when somebody can figure out how to make money out of an illness, that care is provided for the people who suffer from that illness.

Still, there is a remarkable difference between an empty room at this Alzheimer facility, and a room with even one Alzheimer patient in it, fast asleep, or so lost in the haze of dementia that they don't even know you're with them.

And that difference, of course, is life.

It's not just a cliché.  In our performance-oriented society, dementia's victims may appear to be anachronistic.  Something far less than productive, or worthwhile.  Nevertheless, dementia's victims still possess a quality worthy of our respect:  life itself.